Human Fertilisation and Embryology Act come in to force
Today's the day.
Gosh, how exciting. A plethora of mini-Cranmers all contending with the religious quarrels and political nonsense of the day.
It is being implemented in three stages, but this bright and glorious day heralds the bulk of it. It is the beginning of a brave new world of fertilisation and embryology experimentation.
Parliament approved the Bill last autumn, and it is replete with controversial issues.
One of Cranmer’s loyal communicants writes:
“Much fuss was made, and quite right too. However, tucked away here and there are aspects which were agreed with hardly a squeak. This was not because these are refreshingly un-contentious. Far from it. But rather because we were barely told about them.
One of these concerned the use of bodily tissues donated for research. The Act permits the use of such tissue to create embryonic clones, fully human or using animal eggs, of the donor for destructive research. In mitigation it must be added hastily that explicit consent must be obtained from the donor for their cells to be used in this way. Now, whatever one’s personal view on such research, that must be seen as a reasonable protocol, respecting bodily integrity and personal choice.
But it’s not that simple.
Exceptions are written into the legislation. Tissue already held in tissue banks may be used if it is “not reasonably possible” for the researcher to trace and obtain consent from the donor and he is not aware of any evidence to suggest they would object (how would he be aware?). Tissue from children may be used in this way if their parents consent. Tissue from the mentally incapacitated can also be used and that bright almost-new Mental Capacity Act was tweaked so that the prohibition on intrusive research did not apply. How? Well, by deeming that using tissue from a mentally incapacitated person to create their clone and then destroy it is not “intrusive”.
What did our elected representatives have to say about this?
Well not much, apparently. But then, it was slipped in after the only free votes (for the Government, that is), debated only in Committee, and then pushed through the remaining Commons stages on a guillotine and with Labour MPs on a three line whip.
But at least we know that efforts must be made to trace us and seek explicit consent before our stored tissue can be used.
Except that the UK Biobank seem to think they needn’t bother.
This organisation currently holds cells provided by over 363,000 altruistic individuals which they make available for medical research. Unlike Generation Scotland, a Scottish counterpart, they see no need to commit themselves to obtaining explicit consent. If tissues are supplied to researchers anonymised, as is often the case, there is not a lot that researchers can do.
If UK Biobank want people to keep faith with them and continue to donate tissue for research, they need to think again. We need to able to trust our research community. And they need our trust because without it they will lose our support. At least that’s how they see it in Scotland.
And that was the message of Alder Hey, too. Is it so soon forgotten?